Andrea Gilats was completely devastated when she lost Tom, her husband of 20 years, to cancer. For two years she wrote him daily letters. But as months turned to years, her overwhelming sorrow didn’t fade as expected. Instead, it consumed her life for nearly a decade.
“I felt that my world had broken apart. I couldn’t imagine a future without him, and simply getting through each day felt like climbing Mount Everest,” said Gilats, author of After Effects, a memoir about her grief experience. “I felt like a robot as I lived day after day with no relief from this intense emotional pain.” Gilats lost a third of her body weight because she couldn’t stomach eating.
What she didn’t know then was that she was experiencing complicated grief, or what experts now call prolonged grief disorder (PGD), a recently recognized mental health condition that affects up to 7% of bereaved people.
What is prolonged grief?
We all grieve when we lose someone we love. It’s one of the most universal human experiences, and for most people, grief gradually softens over time. But for some, like Gilats, the pain persists and becomes debilitating.
Prolonged grief disorder, or complicated grief disorder, is characterized by intense yearning for the deceased person, preoccupation with thoughts of them and significant functional impairment. People with prolonged grief may experience identity disruption, feeling as though part of themselves has died. They often feel stuck, unable to imagine how to live their life without their loved one.
“If you met someone with prolonged grief three, four or five years after a loved one had died and you met someone three months after a loved one died, it’s very possible that you wouldn’t be able to tell the difference,” explained Katherine Shear, Ph.D., professor of psychiatry and founding director of Columbia University’s Center for Prolonged Grief.
Unlike typical grief, which naturally evolves over time, prolonged grief keeps people stuck, preventing them from adapting to their loss. “It’s persistence of grief, intense, preoccupying, impairing, grief,” Shear said.
PGD was officially added to the Diagnostic and Statistical Manual of Mental Disorders in March 2022, giving validation to millions who suffer from this condition. For adults, the diagnosis requires that at least a year has passed since the death, while for children and adolescents, it’s six months.
It’s important to understand that prolonged grief is not the same as depression, though they can occur together. Depression involves losing the ability to experience any positive emotions. In contrast, people with prolonged grief can still feel joy when talking about their deceased loved one or recalling positive memories — the problem is that everything centers on the absence of that person.
“There is sadness, but it’s mostly the yearning and longing and preoccupying thoughts and memories of the person who died,” Shear said. This distinction is crucial because it affects treatment approaches.
Who’s most at risk for complicated grief?
Shear’s research identified several risk factors that can make someone more vulnerable to prolonged grief. Factors include a history of mental health disorders, particularly mood and anxiety disorders, she said.
Additionally, your relationship with the loved one who died may also play a role in whether you experience prolonged grief. “When you’ve had a really positive relationship with the person who died, and especially if it’s very unique, if it’s the one person in the world that you were really truly close to, that makes it really harder,” Shear said. Parents who lose children and spouses who lose partners are among the most vulnerable.
Circumstances of the death also matter. Sudden, unexpected deaths, particularly those involving violence, trauma or young people, are more likely to lead to prolonged grief. Research indicates that nearly half of those bereaved by unnatural deaths, including accidents, suicides, homicides and disasters, may develop PGD.
Shear also identifies previous trauma as an additional risk factor for developing prolonged grief, noting that people who have had a prior trauma or childhood trauma face elevated risk. This connection becomes particularly concerning when examining trauma exposure disparities.
Research consistently shows that Black youth and adults experience higher rates of trauma exposure and PTSD than their white counterparts. And studies reveal that more Hispanic and non-Hispanic Black adolescents experience mood disorders and exposure to multiple types of violence over their lifetimes compared to non-Hispanic whites.
These disparities stem from systemic factors, including structural racism, inequitable housing policies and what researchers term “racial trauma,” the mental and emotional injury caused by encounters with racial bias, discrimination and hate crimes. The Covid pandemic further exacerbated these vulnerabilities, with communities of color experiencing disproportionate death rates, which may increase the risk for prolonged grief.
Read: The Mental and Physical Load of Racial Trauma >>
Finding a way forward
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The good news is that prolonged grief disorder can be treated. Shear developed Prolonged Grief Treatment, an approach to helping people adapt to their loss while maintaining a connection to their deceased loved one.
The treatment works on two tracks, Shear explains: helping people accept the reality of the loss, while recognizing that their relationship with the deceased continues in a different form, and helping them reconnect with their own values and interests to rebuild a meaningful life.
That might involve practical steps like pursuing long-held dreams (one of Shear’s patients opened the antique store she’d always wanted, while another learned how to make chocolate sculptures), creating daily rituals of self-care, and strengthening relationships with living family and friends. The therapy also addresses avoidance behaviors and thought patterns that keep people stuck in their grief.
Three studies funded by the National Institute of Mental Health found promising outcomes: 7 out of 10 participants who received the specialized grief intervention experienced meaningful improvement in their symptoms, compared to Interpersonal Psychotherapy (IPT) for Depression, a proven form of talk therapy treatment for depression, which showed progress in fewer than 1 out 3 participants.
One study Shear conducted found that antidepressants alone don’t help prolonged grief symptoms significantly, and they are much less effective for grief than for depression. While Shear stresses that more research is needed for conclusive results, these findings suggest that prolonged grief requires its own distinct therapeutic approach rather than borrowing treatments designed for other conditions.
“Grief is actually a form of love,” Shear noted, referencing author C.S. Lewis’ insight that grief represents the continuing bond we have with those we’ve lost. The goal of Prolonged Grief Treatment isn’t to “get over” the loss, but to learn to carry it while still living fully.
When to get help
For those wondering if they need help, Shear suggested looking for these signs:
- Feeling unable to envision life without the deceased person months or years after the loss
- Feeling like the death happened yesterday, even when significant time has passed
- Losing social support because others are telling you to “move on” or even starting to avoid you
“In my case, I had a work colleague whose husband died three months before mine, so we were grieving at the same time,” Gilats recalled. “But after about two years, I noticed that she was much better. She seemed to have adjusted well. She seemed to be making the best of her situation, and she was happy. That was when I realized that something wasn’t right. I was stuck in my grief, and she was moving on.”
Nine years after her husband died, Gilats decided to intentionally focus on activities to distract herself from the pain. Eventually, she found solace in yoga and a new purpose as a yoga instructor. She then went on to become an author and write three books.
If you’re struggling with persistent, overwhelming grief that’s interfering with your daily life, know that you’re not alone, and that help is available. Shear suggests scheduling a consultation with a therapist who can help you identify whether you’re experiencing prolonged grief as a great first step.
Additionally, Gilats said, “Try doing some of the things you’ve always enjoyed. Those hobbies and activities will be good friends to you now. I remember that one day, to my surprise, I realized that I was laughing more, and soon after that, I realized that I could actually feel happy again.”
Now, Gilats says she’s no longer stuck in her grief. Her experience offers hope to those who are in the thick of it.
“I still think of my husband every day and I still miss him, but now I’m able to enjoy my memories of him and our marriage,” she explained. “Today, I feel a deep gratitude for having spent 20 wonderful years with the man I will always love.”
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